It is nice to talk to you, what is ME, I can only answer from my experience, ME stand for Myalgic Encephalomyelitis, hope I spelled that right! It is an acquired illness which means that it is something you “get” rather than something you are born with, for most people it starts with a flu like illness or some other “stress” like an operation, that you never seem to get over, there seems to be a disposition in some people to go on to develop ME why it is not yet known, ME is a neurological illness that has wide systemic affects. Basically it can affect every area, autonomic nervous system, endocrine system, digestive system, cardiovascular system, for some people it is very mild, for other very sever, so they are bed ridden. There seems to be a lot of people who have jiont hypermobility syndrome and EDS also with ME, there is a lot of cross over with FM, POTS,
For more information, I would recommend you visit the ME Association at http://www.meassociation.org.uk and Invest in ME at http://www.investinme.org sorry I don’t know how to do that link thing? if you go to Invest in ME look at the Guidelines page and find both the Canadian Criteria and the New International Consensus Criteria. They are the best as they fully explain the illness.
On a personal level, I developed ME following a Flu stomach bug about 18 hears ago, I just never recovered, was wiped out, I was house bound for the first couple of years fatigue exhaustion, in a lot of pain aching limbs, and joints, awful IBS type problems, headaches, etc. I saw lots of different Doctors, was given different labels, fibromyalgia, Ryanaurds, told I was hypermobile at the time that didn’t really take much notice of the hypermobilety I’d always been that way, I had no idea that it could actuarially be the underling link, I did after about 5 years start to improve, then I needed to have an hysterectomy, after that operation, my ME was exasperated and I started to have fainting fits, this eventually was diagnosed as POTS, I have been badly affected since, I’m mostly house bound, it has been the last few years that I have found out that I could possible link all my health problems to JHS, it would make sense, I have actuarially had problems since teenage years, but it was always put down to being a moody teenager, and before that growing pain, but now I can see that it could all be linked. I’m waiting to see professor Graham in June, he is an expert in hypermobilety and EDS so I am hoping he can tell me what is really going on.
Sorry to have rambled I hope I have been some help